Update from the Mayo Clinic

I started off this morning with a phone call from the Mayo Clinic. They were looking for an update on my condition, as I started yet another stage down on the steroids. Besides the cold I have been fighting, I ran down the list of my symptoms: headaches, tremors, lack of balance, and high blood sugars. Some of these are from the steroid withdrawals, and some are from the scrambled brains...just kidding Stephanie! My sister doesn't appreciate my sense of humor!

I am still having disconnect problems where my brain is not communicating well with my hands, feet, bladder, heart and now esophagus. The Mayo doctor explained it by saying that the episodes I had this past summer were similar to having strokes. While it wasn't full paralysis, the nerves had to find new pathways to communicate with the rest of my body. Since I am younger than most patients, my body compensated well. Unfortunately, it will take a long time for the nerves to remember their original pathways. Some pathways will never be restored, but we are optimistic. I am now at 10mg of steroid. I have only been on a full dose of the anti-rejection meds for two months. It may be another month before they have built up fully in my system. This has the Mayo Clinic impressed. They did not think that I would be able to reduce the steroids so quickly.

They provided me with a game plan for the next few months. It is important for me to get off the steroids as soon as possible since I have now developed a lump on my neck and my blood sugars are fighting the withdrawal. They are worried my body is becoming too dependant on the insulin. They told me what to do if I have another relapse, and have asked me to consider returning to Minnesota for additional testing, but there is not a rush.

Their final instructions were to have a great New Year and not to blow anything up, seeing how my crackhands and fireworks are not a good team! Haha...just kidding! I hope you all have a great holiday! Be safe!

Update from the Dean Household

The kids are out of school for the next two weeks! They are very excited. We have had a lot of excitement this year...so I am most excited about having next week off! I could use a little peace and quite.

I started the stage down to 15 mg of prednisone last week. We once thought this would be my maintenance dose, but I am a bit of an over achiever! I am not shaking, rattling, or rolling...therefore...the music plays on! I will start another stage down to 10 mg next Monday.

With each stage down, my body has resisted a little more. We may end up raising the immune suppressants, but for now, we will leave it alone. My energy takes a big hit, my blood sugars actually raise, I get migraines, my motor skills suffer and then I usually get very sick to my stomach. Let's just say, everything gets angry! It is worth it though to know that I am making progress. My dream is to be off the steroids completely and find out that the insulin can go away also.

As you may have read in my last blog, Bradie has been having trouble with her vision. She had an MRI, but it did not reveal anything. They scheduled her with a pediatric neurologist for Feb. 22nd. There is a shortage of pediatric specialists in our area, so it takes that long to get an appt. One of her teachers told me last week that she had noticed Bradie struggling and was wondering what was going on with her. It was nice to hear that the teacher was paying attention.

When we registered the kids for school, the counselor sent home a list of support groups that they would be offering. I accidentally signed my kids up for grief counseling. I planned to have them removed from the group, but the counselor said Bradie has been talking about my illness and really opening up to the group. There are kids who have parents fighting illness and some who have lost a parent. It is nice to know that Bradie is talking to them. She hasn't mentioned it to me at all.

The stress of the holidays, my illness, Bradie's problem, has finally caught up with John. He came down with a case of the shingles. Please keep him in your prayers. He has been a rockstar through all of this. He did actually take off a few extra days this season, which is the first time since we have been married. He took the kids to see Avatar and seems to have had a great time.

Ahhh...nuts!

I would love to start out today's post with a funny ode to paper hospital gowns or something completely obnoxious...but I can't. Give me a minute and I might catch my grove.

Well...no one should have to start their Mondays (especially after a holiday that encourages gorging) by getting on the scales! I did, and don't think I didn't let everyone know the level of stupidity with which I found that idea. Then they made me take a simple neurological test. Tests have never been my strength. To say the least, they were not impressed! Apparently, the physical and mental stress of the holidays were more than my little melon...I mean Big brain could handle. Have you ever seen a stroke or head trauma patient go through therapy? Touch your nose, touch my finger, touch your nose, and over here...hmmm...felt a bit like the hokie pokie. Good news is that I write with my right, and make a mean martini with my left! I have fluid built up in my joints, and they do not really know why, but I told them it is much better than before. I assumed it was normal so I never said anything. Oh well, their loss. I am convinced that it will improve on its own as I become more active. I finished the appointment by getting another vaccine and then giving blood...all before 9am.

I began another stage down on Monday. Whoo-hoo! Once again, they informed me that they are not experts on my condition (as one does not exist) so they will follow my lead. What?! Ok, lets keep going. I have never been patient and I am ready to be off these drugs. "Well, if we hit a snag, we can always go back up," says my genius doctor. Sure, as long as my brains don't scramble. Haahaa, silly doctors.

Alright, so do you remember that they told me to refrain from stress while my brain tries to heal? Yea, me too...but someone forgot to tell the rest of the universe. After a full holiday week, I was sitting on the couch with my sweet 10 year old daughter. I was watching her struggle to see. She kept rolling her eyes. While trying to read, she was moving the book around to see the words. I began to ask questions and she became highly emotional. She has been having severe mood swings, and I have put it off on the impending puberty. While I dreaded the thought, it now sounds like it would be a blessing. Bradie explained that she sees thousands of dots when she looks at things. It is like looking through a screen or at a tv that is not in tune. While she claims that it has been this way as long as she can remember, she has never struggled to see before. I took her to the eye doctor. They ran many different tests and said everything looks normal. He ruled out floaters, migraines, allergies, and every other eye condition he could imagine. Feeling strongly that this is neurological, he referred us to our family physician. We met with them this morning. After her examine, they too feel it is neurological. We have a MRI scheduled for tomorrow afternoon and then will be referred to a pediatric neurologist. "Well, one of our kids was bound to be messed up in the head," my sweet husband says. Yes, he actually thought he was being funny! Truly, we all are at the point of needing to find humor.

Please keep us in your prayers and I will keep you posted as we learn more. Thank you to everyone who has given us support. It is what helps us get through these nutty times.

P.S. Below is a picture of Bradie learning who to make my meatball recipe.

Birthdays are blessings

I remember my 30th birthday being emotional, but today was my 32nd and it holds its own weight. Please hear what I am saying though, they were very different! On my 30th, I had just had a hysterectomy and felt overwhelmed at what I wasn't anymore. I was focused on the things I had not become, the ways I had settled, my limitations. I do not feel that way this year.

I wont lie to you, as I sit here tonight, it would be very easy to focus on the fact that I am so tired I could cry. I could focus on the fact that my hands are trembling and my fingers do not want to cooperate. I could focus on the fact that the only time I have weighed this much was when I was pregnant. But I wont...for very long. Haha Really, I have been completely taken by surprise today by the blessings in my life.

Last week, I decided I was strong enough to return to the gym. Feeling frumpy and horribly insecure, it was a struggle for me. You see, these people in the gym knew me as a very athletic girl who looked pretty darn good in spandex...if I do say so myself! Haha! Anyway, I was working out in a room surrounded by mirrors, feeling a little sorry for myself when it became clear that God allows bad things to happen to good people sometimes...but he always turns it in to something positive. As I was working out, there was a woman running on a treadmill behind me. I could see her in the mirror...but then she disappeared. Even with my headphones on, I heard a thundering boom. The woman had gotten distracted, face planted on the treadmill, somersaulted, and then was thrown several feet across the room. Before you have guilt for laughing, she stood up and was fine. Her headphones where crooked and she was red with embarrassment, but completely okay. But I suddenly felt better about myself and was less insecure. See, God is even in the sweaty stinky places! haha

Yesterday, I began another stage down of my steroids. I am now only taking 25mg of prednisone. While that is still a large amount, I am below half of where I was just a couple months ago. It has now been three weeks since I have had to take my daily insulin, and I have only had to take 3 slide-scale shots. I was told not that long ago that this would not be possible. Out of the 13 medications I was taking each day, I am now only taking 8.

Today, I woke up to see several emails from my amazing friends who were wishing me a happy birthday. I received many more messages throughout the day, and everyone made me feel blessed. I got a call from my Daddy before I had to start my day. This is always a mixed bag for the both of us, because we said goodbye to my grandfather 12 years ago on my birthday. I arrived at the Senior Center to find that my sweet friend Barbara had decorated my office with balloons, sidewalk chalk and confetti! To top it all off, I learned that I have lost 5lbs in two weeks. Whoo-hoo! That is just icing on the imaginary birthday cake that I am not allowed to eat! Jk Then I got to end my day with a call from my mother. It is tradition for her to ask me, "Do you know what I was doing this time...years ago?" It is always the same painful story, the drama grows each year, but I wouldn't have it any other way!

I told many people today, birthdays are not entitlements. Just a couple of months ago, we did not know if I would see this birthday. With the possibility of stroke, coma, and death being risks of every stage down we make, we celebrate today a little more than we normally would. Life is not always easy, but everyday that we have is an opportunity to be blessed. I am blessed everyday in different ways, but I am not always good about acknowledging them. Every time my children climb into my lap and I get to listen to their funny little stories, is a chance for me to remember. Even going into the office when I am exhausted or not feeling well gives me the chance to remember the amazing place I work and the special people that I am blessed to meet and see each day. It really is a blessing to be allowed to be a small part of each of your lives.

Stinking germs!

We have success! Nearly a month ago, I began the scary task of tapering down my steroid levels. For those who are new to the scene, this was a daunting task for me, because the last time we attempted this, I suffered a relapse. The last EEG showed changes to the brain from the relapse and left me with some minor permanent side effects.

We began the stage down to 40mg and stayed there for two weeks. I experienced headaches and fatigue for the first 4 or 5 days. Then my blood sugars began to rise and became unstable. This was what happened right before the last relapse, so it made me very nervous. We continued to pray and continued to rest, hydrate, and give my body every chance to adjust. Sure enough, by the second week, my sugars stabilized and my energy began to come back.

The Monday after we attended the Cowboys game in Dallas, I started the next stage down to 30mg. I had never been below 40mg, so this was a huge milestone. I took off work for a week and rested. Fatigue and migraines were the biggest problem. All of my nerve endings seemed to be screaming at me. I was on sensory overload, but by the end of the first week, I was feeling better.

It has almost been two weeks at 30mg and it looks safe to claim that the new immune suppressant is doing its job! My endocrinologist is so impressed at the success that she even asked me to try to come off the daily insulin that I have been on due to the complications from the steroids. It has been 10 days off the time release insulin and I have only had to take two slide-scale shots! My endocrinologist had told me at the last visit that she did not expect that I would ever be able to come off insulin completely, but it now looks like I may be off of it by the end of the year! I have had to switch to a strict diet for a while, but hey...after being on steroids for the last five months...my booty could use the diet! haha Oh, one last praise...I took the bone replacement medicine last week and everything went smoothly. I had experienced dizziness and blood sugar problems after taking it last month, but this time was flawless!

Okay...here is what I need from my prayer warriors! Both of my children were diagnosed with the flu yesterday. While I have had the regular flu vaccine, they are thinking that this one is either the strain A or N1H1. A non-active vaccine for that one just came available, so I have not had a chance to get that one. Between the steroids and the Cell-cept, I do not have an immune system to fight something like this. The doctors recommended that I check into to a hotel until this blows over, but you tell two little children who feel miserable that they cannot be around their Mommy! I spent $250 on Tamiflu and stocked up on Lysol and chicken soup. Just another adventure at the Dean household!

Still kick'n

Thank you to all of my sweet friends and family who took the time to check in on me when things got a little quiet in the cyber world. There have been ups and downs over the last few weeks, but I am doing quite well...all things considering.

Three weeks ago, I had planned on reducing my work schedule to half days so that I could be rested for the stage down of my steroids. Well, I ended up getting sick, missing a full day, and then having to work longer hours to make up for it...so things didn't go like I had planned. I still staged down to 40 mg of steroids two and half weeks ago. The first couple of days left me very fatigued and all of my nerve endings were screaming at me, but then my body adjusted. I have amazing people around me at work who have had to pick up the slack when I have had to go home early or couldn't get out of bed. They truly are a blessing to me and my family.

This week started the stage down to 30 mg of steroids. This is a huge step for us! I have not been below 40mg without relapse. I have taken off work all week to rest and take it easy while my body adjusts. As with the stage down to 40, I became very sick to my stomach last night and I am fighting fatigue and headaches, but expect to adjust like before. Thank you for all of your prayers. I know that this would not be possible without the Lord's hands.

Speaking of blessings...my sweet friend Randy who knows it has been a dream of mine to attend a Dallas Cowboys game sent John and I to the Atlanta game on Sunday. We met up with friends while there. One of John's suppliers put us up in a hotel and treated the boys to golf on Saturday before taking us all to dinner Saturday night. It was a great weekend! And I must say...anyone who is not a Bradie James fan needs to see a doctor!

Are we really ready?

It is a cool and breezy Friday...compared to what to we are used to around the Hill Country! I just finished having blood work done to rule out lupus and some other pleasant disorders. Just before donating a pint, I was able to visit some amazing friends of mine who are new parents to a precious little miracle baby boy! I watched these two brilliant and well equipped people and still thought..."They have no idea how their lives are going to change!"

That is a resounding theme around me these days though. My life is going to change over the next month, and how it will unfold is a mystery to everyone. I have a bone scan on Monday to reveal the extent of damage that the steroids have caused. I will go next Friday to have more blood drawn to see if I am anemic from the Cell Cept and to find out if I have to add cholesterol meds due to the diabetes. All of this is routine now and I have confidence that we can handle the results from any of those tests. What does have me concerned is that we are preparing to remove the steroids.

The vanity in me is ready to be off the steroids and for my body to adjust to its previous form. While I may only weigh 120 pounds now, I have gained 20 pounds in just the last two months. When you have been little your whole life, you would be surprised how many people think you are unaware that you have gained weight...and point it out! That being said, the risks of coming off the steroids terrify me.

I will work half a day next Wednesday and Thursday, and then take my usual Friday off. I hope that this will give my body the chance to rest. On Monday, the 12th, I will back down to 40mg of prednisone. This is the level that I was at when I relapsed. I was not on the CellCept then, so hopefully this will be less eventful. Then on the 26th, I will try to back down to 30mg. This will be uncharted territory. If we are successful, we will continue to back down the steroids more. If we are not successful...well...I will relapse. With each relapse, I will suffer brain damage and I am at risk for...not good things.

While at Bible study last night, I was reminded of a very popular verse, but one that now has new meaning to me. It is Jeremiah 29:11

For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.

While I know that this verse does not guarantee an earthly future, I hang on the word "hope" and trust that the Lord wants to protect me from harm. Maybe these are thoughts planted by the enemy, but I have been thinking a lot lately about my babies. I have been playing the "what-if" game. What if this does not go well and I am gone, in a coma, or unable to be the parent that my kids need. Have I taught Bradie enough to ensure that she grows into the amazing woman, wife, and mother that she can be? Have I built Logan up to have the confidence to be the Godly man, husband, father, and leader that he is purposed to be? Have I left an example for them to follow that will inspire them?

The real answer is no. That is a job much bigger than me, and I know it is in the Lord's hands. I just pray for peace, and I ask that you pray with me. Pray for my coverage over my family. Pray for strength to follow the path we are given.

Clarity

Today is my day off and the sun is shining. Maybe that is the reason for some clarity. My kids are on a trip with their grandparents, so I awoke to a quiet house. This has given me time to sit and put some thoughts down.

Last Friday, I went for an EEG. That was the test to see how my brain is doing. The first one that was performed the day I was initially hospitalized showed a small bit of damage on the left side of the brain. The test from last Friday showed more damage to the brain on the left side from the last relapse. It is safe to assume that with every relapse, there will be more damage. This is a scary fact, but the one that we face. The obvious question is how to prevent a relapse.

The answer is that we really do not know. We know it is a relapsing and progressive disease, but we do not know much more. We are trying different things, but have no guarantees of what will happen. For those who know me best, you know that is the hardest part. People ask me all the time about how I am doing. This is the truth as I can best describe it:

I wake up each morning and get to raise two amazing children. I get to influence what they eat, wear, watch, and do while getting to protect and challenge. I get to run a house and decide what gets done, what we need, and even what is for dinner. I am blessed to be part of a Senior Center where I help make decisions about ways to grow and serve the members. But I can't make my hands quit shaking. I cannot prevent random muscle spasms. I can't promise I wont fall down walking across the room because my feet didn't get the message to move. I can't control my weight. I have little control over me!

I had an experience last Saturday that scared me and it has taken a week to digest. I started on my new medicine to combat the damage that has been done to my bones from the steroids. I didn't notice any changes in the way I felt, so I drove into town. While at the store by myself, I started to feel different. As I would look around, instead of a panoramic view at things, my brain was giving me choppy snap shots. This made me dizzy. My blood sugars were also dropping, which didn't make sense...as I had just eaten and taken my steroids. They should have been rising. I quickly headed to the check-out, grabbed a pastry and climbed in the car. I was able to eat, but the following minutes are foggy. My head cleared enough that I was able to drive home and climb into bed. I saw the doctor on Monday to discuss what was going on with the medicine. He said that I am probably getting a little anemic from the immune suppressants, but we are going to let my body try to rebound on its own over the next couple of weeks. The dizzy spells are from the bone replacement meds, but they are in my body for a month. We do not know if the symptoms will completely go away or if I will experience the same symptoms every month.

The bottom line is that I have tried to keep my schedule and activities the same because that is all I have control over in my life. Those are the things that make me feel normal. The truth is that we do not know if this medicine will work, but there are choices I can make to help it along. I need to look at the areas I can back out and the things I can let go of for now. This isn't easy for me, so I ask for your prayers, patience, and understanding.

News of all kinds!

Well my sweet friends and family...I have news to share with all of you about the whole Dean Family! I went to the doctor this morning to have another EEG done to see if there has been a progression and if there was damage after the relapse in August. But before we go into that...let's talk about some other rockstars:

Most of you know that my husband, John, fell off a roof a few years ago and shattered his ankle. Plates and screws, countless surgeries, and nearly a year on bedrest couldn't put Humpty back together again because the bone died. He was told that ankle replacements are only good for about 15 years, so he wouldn't be a candidate for another 25-30 years, and even then, he might not have enough viable bone. The ankle would continue to crumble, so they put him in a brace to slow the process. Last year, his doctor told him that there was significant disintegration and he would probably need metal rods added to the joint within the year.

We arrived at his annual follow-up appointment prepared to schedule a surgery that would return him to bedrest for 3-4 months. With my health situation, this was scary for the whole family. They x-rayed his ankle and entered the room surprised. His ankle had hardly changed over the last year. They sweetened the pot by telling us that a new ankle replacement has been invented that will last and they think he will be a candidate for it. If he can wait just 3 or 4 more years, he could get the replacement and not have to ever have the joint fused! The good news kept coming. John has been in pain every day since the accident. They looked at where the pain was coming from and told him it was from scar tissue. They gave him a shot of steroid and the pain is almost completely gone! He feels like a new man.

Bradie is loving the Fifth grade. She was assessed at an 11th grade reading level last week. What do you think the chance is that we will find a book at her level and it will be appropriate? I guess there are worse things to worry about. She received an award today at the pep rally for her assistance with the kindergartners. We are very proud of her!

Let's see...Logan...hmmm....well, he is totally pumped that he is about to lose another tooth! The third grade is rolling along and his teacher was a perfect match for him. He is making progress with his reading. Our goal is to be at grade level by the end of the year, but this will mean a lot of extra work. We are very proud of the extra effort he is giving.

Ok...I started on a slow progression of the immune suppressants Labor Day weekend. Last Friday, I reached the full level. By Sunday night, I was very sick to my stomach. I woke up Monday morning swollen like a tick and sick as a dog (hmmm...detecting a theme). I had a board meeting to attend with a full agenda of serious topics. As if that was not stressful enough, when I got out of the meeting, I learned that one of our exercise contractors had resigned. News had traveled and my office was full of people asking about what had happened. As a result of the stress, my sugars went through the roof, and then I realized I didn't have my insulin with me. I have an amazing group of people at my office who allowed me to go home a little early. My kids were great and allowed me to lay down and rest. The good news is that prior to the immune suppressants, a day like that would have triggered a relapse. While I had effects from the stress (swelling, headaches, increased tremors, loss of balance, muscle spasms), there were not any myoclonic jerks. This has given my neurologist hope that the drugs are helping.

I had my EEG this morning at 10am. They spent about 30 minutes attaching wires and Vaseline to my head! Then I got to relax in a lazy boy while they mapped the brain activity. When they finished, they removed the wires and rubbed the Vaseline with a wet rag. Oh joy! My thin and naturally curly hair that is straightened every morning stood straight up in the air! That was when they informed me that there was not a room available and I would have to wait in the lobby! Awesome! After an embarrassing 20 minutes with strangers, Dr. Yankov peeked around the corner and asked me to join him to look at the EEG. He turned to me as we entered the room, gave me a hug, and said, "Oh, you have gotten all big from the steroids." Ahhhh....I know we have a language barrier my Russian friend...but telling a woman she has gotten bigger is never a good idea in America!

He reviewed the EEG and confirmed what we suspected. There was increased damage from the relapse back in August. He noted though that it is in the same area as the other damage and not at a surprising degree. This probably explains why I have never been symptom free since the initial onset. It also means that the hand tremors and balance issues probably will not get any better. He did soften the blow with optimism about the immune suppressants. He said that he wished we had started them sooner.

The most important news that I have to share is how blessed I feel! For anyone who questions whether God exists, just needs to have walked in my shoes over the last few months. Every time that I thought life was getting too hard, and that I couldn't take another step, God would send one of you my way. It never failed that on a day I was feeling down, one of you would send a card, pick up the phone, or send a random text. Some of you have gone to the extreme with your support and it always leaves me speechless! Some of the strongest support has been from strangers. Please know that it means the world to me! I have received cards from Sunday school classes from all over the State. I read every hand written message and thank God for each of you!

But my mommy said I am special!

I was dreading the Labor Day weekend and questioning if throwing a big enough tantrum would prevent it from arriving. I knew that I had to start my immune suppressing drugs on Saturday. There are many people who take these drugs and adapt to the side effects successfully. However, we are adding immune suppression on top of high levels of steroids...which are immune suppressants! After fighting years of ulcers and gastric disease, taking drugs that are known for causing severe abdominal pain seemed daunting.

I took my first dose of medicine Saturday morning. My daughter woke up that morning with a swollen throat, fever, and body aches. By that afternoon, my son had a sinus headache and was vomiting. Shortly after getting both kids in bed that night, my daughter returned to the living room with a bloody nose. Awesome!

Sunday morning arrived and my children were feeling a little better. John was going to be gone, so my wonderful in-laws agreed to watch the kids that evening for me. I spent the evening with a friend and found myself overwhelmed. I realized that while my life had been shaken. Each minute seemed to drag while we wait to see if these drugs are going to work, make me sick, put me at risk...dominate my life. I know this must sound selfish, but my feelings were hurt that the world kept turning. I felt like the little girl watching her friends on the roller coaster because she was told she couldn't ride.

I spent several hours on Monday reviewing medical journals and articles that my cousin Laura was able to pull for me. I stumbled across some very interesting things. There have been very few patients that have displayed the number of symptoms I have, and few have had them at the level or extent that I have experienced. It was refreshing to learn that there have been a few patients that have been on the immune suppressant that I am on now. Unfortunately, I haven't found any cases where they were able to come off of the steroids completely. Each of those patients also seemed to be classified as having a progressive case. This means that their disease continued to progress rather than occasionally relapsing or permanent remission.

That initially left me depressed and negative, but then I remembered a word...Faith. Who says I will not be the first to come off of the steroids? Who says my disease has to progress? Why are we praying if the future is set in stone. God gave the Israelites manna as daily bread...meeting their needs one day at a time. He didn't promise that it would be easy or without trial. So I am trying to keep the faith.

I will be up to full level of medicine by Friday. My stomach has been a little upset and I run a low fever in the evenings when I am tired, but have been feeling better than I expected. I am exercising a little to fight the bone loss and will begin the calcium next week.

$@*#@!&*#$ (When you can't say anything nice...)

My amazing cousin, Laura, told me last week that I don't always have to be okay...so here is some honesty:

I bawled like a baby the whole way home today...but when I could no longer see the road because my eyes were swelled shut...I decided it was time to buck-up! Things could be worse...I could have to wear tights to work everyday!

Seriously! We start the appointment with the scale. That normally would not bother me, but it revealed that I have gained 15 pounds in just over two months! Holy cow batman! The doctor was sweet enough to say, "Well you don't look like someone who has been on 60mg of steroids for two months. You must not have gained much weight!" I started to feel better, and then remembered how much money he is getting paid. Of coarse he was nice!

He reviewed my file and we discussed two drugs he was interested in using. He gave me the laundry list of side effects and risks. "These risks and side effects are very serious," he said. I smarted off and said," the encephalopathy isn't a walk in the park either!" At least he has a sense of humor. He informed me that he wasn't giving me a choice, he just wanted me to know how unpleasant it will be. The one we chose is pretty strong. Chemo drugs are the only drugs stronger. The plan is to be on them for 2-3 years, and then see if I can come off of them.

There are lots of "unknowns!" My doctor made me feel confident by assuring me that he isn't an expert on my disease...because there haven't been enough cases for anyone to be an expert. Out of all the research he has done, he said the best information came in the format of a doctor noting in a journal, "Hey...saw a crazy patient that I think has Hashimoto's Encephalopathy...and think this drug might work." He found a possible 120 cases in the world ever reported...and every patient responded differently. He promised me that he doesn't know if this drug will work, or how much we should try, or what will happen. He doesn't know if I should work, exercise, or stand on my head. We are on a "let's try and see" plan.

Here is the good news...not: The Mayo Clinic thought an injectable drug might be easier on my stomach and intestines. The drug we are using does not come in that form. But, my doctor said that it wouldn't matter, because the damage to the stomach and intestines starts after the drug is in the blood stream...therefore wouldn't matter what form I receive. Awesome! He also said, that it will be at least 3 months before I can be off steroids...if I will ever be able to come off them. This was right after he said, " It is not a matter of if the steroids will kill you, it is a matter of when." My pancreas is already damaged and now my bones have been stripped of calcium. I start calcium replacement tonight. The label says, "Do not take if you have stomach, intestinal, or kidney problems!" Doc found this slightly amusing...and reminded me that we don't have a choice.

I will have to get a pneumonia vaccine, flu shot, plus the swine flu shot. They all come with risks...but none are worse than mushy brain! He said to avoid sick people, but there was no point in living in a bubble. With two kids, I am going to be exposed. We will just have to roll with what ever happens.

I keep reminding myself that God will not give me more than I can handle. He doesn't promise life will be easy for anyone, but that we are not alone. With so few people who have walked in my shoes, this is hard sometimes. I have found myself mourning the life I had and plans I had made just two short months ago.

I love everyone who has been praying and offering support. It really is what has given me strength. I haven't had the time or energy to thank everyone properly, but please know that nothing has gone unappreciated.

We're off to see the wizard...

After getting a little bit snippy with a few folks, I received a phone call this morning from the Rheumatologist. They asked me to come in tomorrow afternoon. They have received all of my records and are ready to discuss the treatment plan. Here is where I need my prayer warriors:

The Mayo Clinic Auto-Immune Neurologist wants us to use Imuran or CellCept to treat my illness. Both are actually anti-rejection medicines that are often used in transplant patients. Neither has been used extensively treat someone with my condition before. I'm loving the Guinea Pig aspect of all of this! Unfortunately, due to the complications with my stomach, intestines, and kidneys...it would be best to use injectable drugs, rather than oral medications. What's another shot? I can handle that! The biggest complication that I see is that it will reduce my bone marrow function and blood cell count. I also have a history of developing infections, so they will be monitoring my blood levels DAILY for a while. Yep...DAILY! Whoo-hoo! This is not a medical synopsis, but basically...my immune system is attacking my brain, so we are going to attack it back. After about six weeks, we can try to reduce the steroids that are treating the inflammation in the brain.

But lets get to the very serious stuff...the drugs can make whats left of my very thin hair fall out! Houston...we have a problem! I'm just kidding...it will not be the first time I have had a bad hair day. In fact, I wake up every morning wondering, "Who's hair do I have today?" I have had lots of hair identity crisis over the years. For your amusement, I have attached proof.

The Waltz:one step forward, two steps back

I had planned on updating our blog once a week, but life threw a monkey wrench into my plans this week. Thank you for your patience!

The mailman brought me a large white envelope Aug. 17th with the words "Mayo Clinic" on the top. Inside was the full report compiled by the head neurologist. In the report, he states that he considers me to be in remission. Those words should be comforting, except that I am not symptom free. If we accept that I am in remission, then we have to accept that there was permanent residual damage from my last episode. It would also tell us that residual damage could be expected with each relapse. This left a sour taste in my mouth, but it was not the hardest part of the week.

After a full week of activities, Friday morning, my body was very tired! I didn't feel well when I woke up, and my blood sugars spiked mid-day. That evening, I was sitting at a friend's baby shower and I began to shake. The myoclonic jerks (similar to Parkinson's shakes) started back up. A friend helped me to the car so I could get home, but not before busting into tears. I have some amazing friends who were strong for me when I needed it, but I admit to feeling guilty about being a distraction.

By the time I made it home, the jerks were at full force. After consulting with my doctors, we all agreed that I did not have a strong enough immune system to subject myself to an emergency room or hospital. They increased my steroids to 60mg per day, which is higher than when I left the hospital last month. I was put back on bedrest for the weekend. The myoclonic jerks stopped by the morning, but now I am dealing with the aftermath of the inflammation. The disconnect with my feet and organs is presenting challenges.

The rheumatologist has been conferenced on my Care Plan and I am waiting to hear from them about when we will start the immune suppressant therapy. If I can relapse while still on a high level of steroids, then the chance of being able to come completely off the steroids is not likely without the immune suppressant therapy.

Minute to Minute

One thing that I have learned over the last week is that life changes on a dime. Alright, we all knew that already...and I certainly saw that the day I went into the hospital. To clarify, "MY" life changes on a dime. This illness is volatile and keeps me on my toes. The way that my brain talks to my body is random. The way my body responds is as well. I can be walking down the hall, and then my brain forgets to tell my feet to move. Or my brain misfires, my equilibrium is off, and I bounce through the doorway and off the walls like a pinball machine. I try to use my hands, and I look like I am going through withdrawals. This part I handle with humor.

My blood sugars are still unstable which is making my insulin intake difficult. My thyroid levels fluctuate, which is messing up digestion, metabolism, heart rate, and blood pressure. Even my body temperature is goofey. One minute, I will feel strong...and the next, I barely have the energy to breathe. This is where I get frustrated. It is hard to make plans and be part of the world when you do not know how you will feel in five minutes.

I attended a funeral today that reinstated what I have been feeling in my heart over the last few months. It was a good reminder. We are lucky to have EACH minute, no matter what they look like. We have an opportunity to be blessed and to bless others with each breath that we take. Quit looking at the future and horizon if it means you have to take your eye off the present! Don't let guilt and other's expectations prevent you from living a life that makes you happy. Love others...and allow them to love you back! Lastly, my friend Art sent me an email that classically stated,"Even when I am in pain...I don't have to be one!" Haahaa I love it.

P.S. Jim Hatch...you have been able to make me smile since I was a little girl! I love hearing from you.

P.S.S. Karen...Thank you for your support and the support you give to Glenda.

Life back home

As many of you know, John and I have been back to town and re-engaged in our lives for over a week now. We were both physically, mentally, and emotionally exhausted. We had the weekend to rest and settle in before returning to work. Yes, we both returned to work on Monday.

I returned to the office to learn that my computer had a virus. I was comforted at the thought of doing some work from home, until I learned that the brief electrical storm that hit while we were gone, fried the modem at our house. I also had a new employee start on Monday who needed to be trained, and a brand new data base to learn. Friday, we woke up to the fact that our well was out of order. This was just before my 10 year old woke up with a bloody nose. How do you clean the floor, sheets, clothes, and child without water? Both wells (water and the faucet we called a nose) were resolved early in the day. We ended the day with my 8 year old in tears because his prize chicken had been mauled! Apparently, this is not what the doctor meant by "no stress."

So how does all of this factor in to encephalopathy? I had made great progress and was slowly regaining my energy. I had been able to stop taking my NPH insulin (daily long lasting), and had gone a week without needing my slide-scale insulin (the insulin that I take with meals as needed.) We staged down from 50mg of steroids to 40mg. I had muscle and joint pain, as well as some swelling and headaches. But this was much milder than I had anticipated. Unfortunately, despite taking two days to just rest, the stress and fatigue had caught up to me by Sunday. My entire body felt exhausted in a way that is hard to explain. Apparently, my pancreas was tired as well. My blood sugars soared near 300 which is the highest they have been. The tremors in my hands grew stronger, I am having scattered muscle spasms, swelling and weakness.

I am still waiting for the reports from the Mayo Clinic so that I can meet with a rheumatologist. We are praying that the report arrives in the next few days and that I will meet with the doctor next week. While the immune-suppressant drugs are scary and the risks of complications are so high for me, I am prayerful that they will be the answer to these set backs that I experience when life occurs.

One of the many lessons that I have learned over the last couple of months is how little control we have over our lives and circumstances. The harder we try to hold on to the reigns, the worse things become. While I may not understand why we are facing this illness, I do know that there is a purpose. I also have faith that the Lord will see us through and hold our hand until the end. This doesn't mean that we are not scared or that it isn't difficult. To be honest, if it were not for the two sweet angels I am blessed and honored to parent, I would curl up in the fetal position and refuse to get out of bed most days. That just is not an option. And for those who know me also know that just is not my style. I can get through each day by taking it one at a time...but sometimes I am grumpy! Sometimes I throw pity parties when I realize that I have lost my cheek bones but gained three chins. Then I remember that I am blessed and many people face worse circumstances.

Heading Home!

Here are some disturbing facts that I have learned today. Apparently, we are supposed to travel naked! We just paid $80 for us to both check two bags. Even more concerning, Sky Mall now sells a portable microwave for those who want to carry it around like a brief case. That cannot be safe. Speaking of safety...they also make a stainless steel wallet. How do you get that through security. Our new friends sent us home with a tiny jar of homemade raspberry jelly and it was almost considered contraband! Haha

Okay, for the serious stuff: We arrived at the Clinic at 7:30am to try standby one more time. About 9:30am, Penny...an amazing nurse, came and told me they were going to see me. We met with the urologist who rushed testing for us too. We left the clinic and arrived at the airport with plenty of time to spare. Speaking of blessings, they were able to switch our seats so John and I could sit together, and we arrived 30 minutes early to Chicago! It has been an awesome day! We are expecting to land in SA around 9:40pm where we will be met by my parents and presumably, very tired children.

Within a week or two, we should receive all of our reports and instructions from all of the Mayo Clinic specialists. Then we will schedule our meeting with a rheumatologist and start the immune suppressant drugs....and about 20 other new meds that they are adding to the list. I may need a schedule board like at the airport to keep them all straight. Jk

Thank you again to everyone for your prayers and support. I ask that you continue to pray with me for my amazing family. This hasn't been easy for any of them, but they have all handled it with grace and loving support. I know how blessed I am to have each of you in my life. God Bless!

Thursday Update

Today is my Bradie's 10th Birthday! Happy Birthday sweet angel. It sounded like you had a great day today when I spoke with you. Your birthday must have brought the lucky rain I heard about!

We started the morning with our follow up with gastro. We got great news. My ulcers haven't actually flared. The pain that I have is from the auto immune disease attacking my stomach and intestines. We will be able to treat this with medicine and surgery will not be required. Whoo hoo!

We did spend the next 7 hours waiting for neurology...but to no avail. They have asked that we return in the morning and give it one last try before we leave tomorrow. If we cannot get in, we will need to see a urologist in SA. They are farely confident that because of the neurological disconnect, that I am having reflux back into my kidneys. This too, we expect will be treated with medicine.

Late this afternoon, we went for our final meeting at neurology. We first met with a wonderful doctor who is an MD that specializes in auto-immune diseases. She is partnered with the main neurologist here that we have been seeing. After she reviewed the reports from all of my other specialists I saw this week, and reviewed the labs that were run, she agreed with our feelings about triggering a relapse. She agrees that the risk and the detrimental set back is too much. She stepped out of the office to council with our main neurologist before he came in, and she went-to-bat for me! He said that if I were staying in town and he was going to be implementing the plan, he would still prefer to trigger the relapse and run the other tests, but agreed to just move forward.

When we return to town, we will meet with a rheumatologist and begin the immune-suppressant therapy. It will take several months to get the dosing right, and they do expect some set backs with my immune system being so temperamental...so we will begin as soon as possible. After 3 months, we will try to take away the steroids and see how my body responds.

It will be a continuous battle, but not one that we feel we cannot handle. John and I have been blessed by the Lord, our family, church, and friends! I hope everyone knows how much we appreciate this support. I have a restored faith, strength, and will to keep fighting. Lots of love!

P.S. John and I stepped outside the hotel this evening for a fun event. They call it "Thursday on 1st". They line the patio outside our hotel with vendors and set up stage for entertainment. The white building in the background is affectionately nicknamed the "terrorist tower." It is the tallest building in Rochester. An Arab family walked up to the contractor and paid for the building in full with a roll of cash. We have been informed that there is a plan to add on to the Mayo Clinic's Gonda Building to make it surpass in height.

Productive Wednesday

Let me start by telling everyone about my rockstar family! My mother and sister took the kids to Sea World yesterday. Bradie got too hot and threw up on a lady in line for one of the rides. My family never fails to step up to the plate...even when it is less than glamorous.

We woke up at 5:30 again to go have more lab work done. We then went and met with the gastroenterologist. He immediately sent me for an endoscopy and biopsy of my stomach. After I woke up, we moved down to urology. They still were not able to fit us in, but did tell us that there is a good chance that they will be able to see me tomorrow.

We will meet back with gastro in the morning to review the biopsy and pictures. Then we will return to standby at urology. Keep praying for doors to open. It is crucial that we rule out or resolve complications so that we can begin our ultimate Care Plan with neurology. The Lord has opened so many doors since we have been here. I have faith that he will hear our prayers. We will end the day tomorrow with a follow up at Neurology.

Tonight, we are being taken to Rochester's famous steak house Michael's. We are looking forward to the time away from the hospital and the time to feel like something other than a patient. I cannot tell you how amazing everyone here has been...especially my husband!

In the pictures above: John and I are standing in the Gonda Building(part of the Mayo Clinic) overlooking our hotel. The second picture is of the Plummer Building. This was the original Mayo Clinic. The other 23 buildings were built around this one as the corner stone.

Tuesday Update

John and I met with the Endocrinologist this morning after our lab work and MRI. He also confirmed the diagnosis and doesn't feel the need to adjust the Care Plan that Neurology has designed. He does want to start monitoring bone density due to the steroids and possibly add some Vitamin D for the bone strength. We are also running more tests to check on the pancreas. Since I was pre-diabetic prior to the steroids and insulin dependant on them, they want to predict what will happen down the road.

We then went down to gastro and met a wonderful nurse named Shelly. She told us that there were not any appointments available. She knew that we also were trying to get into urology. She took my cell phone number and sent us on our way. After we left, she went to the back and pulled strings. She called me and said that we now have an appt at 8am tomorrow morning. God is good!

We are still trying to get into the urologist. Unfortunately, they have told me there are only two that can work with my condition. We are going to go sit on stand by and pray that an opening comes free before we leave. Come on prayer warriors!

We spent the evening at a friends farm. We sat on the deck and watched the cattle in the GREEN pasture before enjoying a great dinner. The weather has been in the mid 70s with a cool breeze! Minnesota is showing off its best while we are here.

Lots of love to everyone! We are heading to bed early for another full day. God Bless!

Morning Update

We knocked out an MRI and blood work all before 9am. We got our next schedule of events. We will meet with an endocrinologist at 9:45am. I am sure he will order more tests. Right now, they have scheduled the gastro consult for Friday morning and Urology for Aug. 27th! So....we will be spending the next couple of days in the lobbies trying to get in on stand by. We will let you know more when we do. You are all so amazing! We feel truly blessed to know that we have your support...despite how cheerful I look here! JK

A date with Neurology

Quick personal indulgence...I love you Bradie and Logan! Here is a picture of mommy doing fine! I will see you on Saturday. Be good and make me proud. Logan...keep your chin up and be strong. Bradie...I am so proud of the help you are giving Nonnie! Now you both quit reading The rest is for the adults!

We spent the day with our Neurologist, Dr. McKeon. He is a very serious little Irish man! At the end of the day, he feels fairly confident confirming the diagnosis of Hashimoto's Encephalopathy. When it comes to treatment or management...that is where it is going to get complicated. There are still a couple other neurological diseases that must be ruled out in order for us to follow the treatment plan. Unfortunately, these tests cannot be done while I am on steroids. I have been asked to come off of the steroids, allow a relapse to occur, and run the required tests. At that point, I could return to the steroids and add an immune suppressant drug.

Here are the points of concern: With a relapse, I run the risk of coma, stroke, or death. My doctor feels the risk is necessary. When the relapse occurs, I will have a set back that slows down my ultimate goal of living in remission. Once we are able to restart the steroids, the immune suppressant drugs will bring their own complications. I will be at a high risk for infections and increased chance for cancer. I will have to receive the drugs through IVIG which will mean going in for the intravenous treatment, then daily...weekly...monthly blood draws to monitor about a 1000 complications that can occur.

Here are some positives: I will be able to come off of the steroids gradually once on the immune suppressant drugs...we hope. After a few years of the immune suppressant drug, we can attempt to come off of these drugs. One great point is that this neurologist is comfortable with designing a plan, but allowing my local neurologist to manage...yet remaining on the case.

What we still do not know: I will meet with endocrinology, gastroenterology, and urology over the next couple of days. They will run their own tests. While we suspect that there are issues to address, we are praying that it will not be anything that will delay our new Care Plan. I would not be able to come off of the steroids or start immune suppressant drugs if surgery or aggressive treatment will be required. He also admits that we do not know what will happen long term. We have been informed that most of the studies that have been done are after the patient has died. There are very few...possibly only one, other case tracked through the treatment. We do not know anything about what the future will hold.

We have an MRI at 6:50am followed by more blood work tomorrow. We should know more about our schedule after 9am. We will keep you posted! Love you all.

We are here!

Surprised by how much the travel took out of me, we are so happy to have made it to our hotel. The only side effects that I had from flying was weakness and balance problems. They lost one of our bags...but getting 3 out of 4 isn't that bad. Don't worry mom...I won't have to be naked! It was only my bag with foo-foo stuff. I can live for one day smelling like hotel soap with dry skin! Haha We had a great nights sleep and are about to meet Sharon Byrne for breakfast. Sharon is a contact that I made through one of my amazing couples at work. Sharon is a retired nurse and knows the Mayo Clinic well. She is going to give us some pointers and show us the ropes. We are so blessed by our families and friends. This is a picture of the Mayo Clinic which is literally outside the front door of the hotel. We will keep you posted. My phone charger is in the bag that has not arrived, so email or call on John's phone if you need us! Lots of love.

Security, Airports, and Airport Food...Now that's romance!

John and I spent yesterday, which was our 11th anniversary, running last minute errands and packing until 11:30 pm. We were up at 3am this morning to catch our flight. We checked bags at the curb and had wheelchair service straight through security and to our gate!

I have to admit that I have a little guilt. We saw John's uncle Jack and a bunch of friends from church at the curb. They were leaving for their Africa trip at the same time. John and I ate breakfast and watched for our friends to show up at their gate just across the isle...but they weren't coming! Their plane loaded and they still weren't there. I called Jack and he was cool as a cucumber. Apparently, their 17 bags slowed things down and there were a few hiccups...but they did make the flight. In fact, Teresa Moore just texted me that they are putting bags in lockers and considering heading into New York City. Does Jack know what he is doing? Joanie...your husband is a brave man. I asked him what gate he was flying out of. He asked Linda and she gave him the terminal number, then the flight number, then the day they return. Jack and I laughed!

At this time, John and I are at O'Hare airport for a 4 hour layover. We should arrive in Rochester,MN close to 4pm this afternoon. Okay kids...here is a picture of what the top of clouds look like from the plane. Hill Country friends...this is why we do not live in the city! ( houses.) Sorry OBama, you can keep Chicago! Oh, and John thinks the wheelchair bit is hilarious and had to post a picture!

What is Hashimoto's Encephalopathy?

Hashimoto's Encephalopathy is a neuroendocrine auto-immune disease. The bodies immune system produces antibodies that attack the neurons in the brain. There have only been about a dozen cases in the U.S. diagnosed since 1966, though quite possible many cases have gone undiagnosed. Some of the most common symptoms of Hashimoto's Encephalopathy include: disorientation, psychosis, coma, stoke episodes, tremors, concentration and memory problems, jerks in the muscles and lack of coordination, headaches, partial paralysis on the right side, and speech problems. Sometimes, patients are mistakenly diagnosed as having had a stroke, or having Alzeimer's.



Of the few patients with this disease, the presentation and origin of the disease varies. In Kimberly's case, HE is a rare progression of her Hashimoto's Thyroiditis that was diagnosed in March of 2008. Looking back, we now recognize that there were signs of neurological distress at that time, but coincidentally was treated by steroid treatment to reduce inflammation in the thyroid. Hashimoto's Thyroiditis was named after the Japanese physician Dr. Hakaru Hashimoto, who first described this condition in 1912. Hashimoto's Thyroiditis is the most common cause of hypothyroidism in the U.S., and is an autoimmune or chronic lymphocytic type of thyroiditis. Hashimoto's Thyroiditis is not uncommon. The thyroid gland typically becomes enlarge and the antibodies the body normally produces to protect the body and fight foreign substances such as bacteria, are found to 'attack' their own thyroid tissue. Kimberly's thyroid is filled with hundreds of non-threatening cysts.

June 30, Kimberly drove to a Neurologist's office to meet and discuss some symptoms that were troubling her. While sitting in the office, she began to shake uncontrollably from head to toe. They call these myoclonic jerks. This is similar to what patients of advanced Parkinson's experience. After a short visit with the doctor, Kimberly was admitted to the hospital where they confirmed the diagnosis of Hashimoto's Encephalopathy and began high doses of IV steroid.
After several days, Kimberly's symptoms were controlled and she was sent home on oral steroids. Unfortunately, the steroids have forced her to be insulin dependant and have reopened stomach ulcers. Another coarse of treatment will be required to put the disease into full remission and to keep her from relapsing. However, there is not another drug identified that will accomplish this goal.

Kimberly and her husband John will be flying to Rochester, MN to meet with doctor's at the Mayo Clinic on July 27. They are praying that the doctors and specialist will give the answers that they seek.